This is an excerpt from There is Hope: Learning to Live with HIV, 2nd
Edition, written by Janice Ferri, with Richard R. Roose and Jill Schwendeman, a
publication of The HIV Coalition.

How to Tell Others You Are HIV Positive

There's really no easy way to tell someone close to you that you have a
life-threatening illness. Test Positive Aware Network suggests the following
approach for breaking the news to the "significant others" in your life
(especially your parents):

1) Assess the reasons you want to tell your friends or family. What do you
expect from them? What do you hope their reaction will be? What do you expect
it to be? What's the worst possible reaction they could have?

2) Prepare yourself. Gather clear, simple, educational brochures, hotline
numbers, pamphlets and articles on the disease. Take these with you to leave
after your discussion.

Advertisement

3) Set the stage. Call or write and explain clearly that you have to meet
with them to discuss something extremely important. This is a
once-in-a-lifetime experience for all of you--don't treat it in an offhand or
rushed manner.

4) Enlist help. Ask a close friend or family member who knows the situation
to come along or write a letter to your folks asking them to try to
understand and reminding them that their acceptance and support are vital.
Ask your physician or therapist to write a letter to your folks as well. This
can be most effective--many parents will believe or listen to a stranger
before listening to their own child.

5) Be optimistic. Accept the possibility that your parents are caring and
rational adults. Likewise, you need to be as caring and rational; having a
chip on your shoulder or selling your parents short is not going to help win
the support you need.

6) Let the emotion come through. You are not asking to borrow the family car.
The prospects to be considered are as frightening for them as they are for
you. Now is not the time to assume false fronts or joke away the more serious
implications.

7) Let them know you are in good hands. Explain how you are taking care of
yourself, that your physician knows what to do, that a support network exists
for you. The single thing you are asking of them is love.

8) Let them accept or deny it in their own fashion. Do not try to change
their position right there. Leave them the material and put an end to the
discussion if things go very badly. Try not to revisit past discussions about
lifestyle.

9) Give them some time to digest the information and adjust to the news.
After a reasonable period of time, call them back to assess their reaction.

10) ACCEPT their reaction and move on from there.

Attempt to keep the lines of communication open. Approach the process of
telling with the best expectations. Still, with all the preparation possible,
there may be surprises. Be willing to pull out, pull back and give them some
room. If you're prepared for the worst, the best will be a blessing.
adapted from Positively Aware (formerly TPA News), July, 1990. Based on an
article by Chris Clason. reprinted with permission.

Telling Your Employer You Are HIV Positive

Deciding if and when to tell your employer about your HIV status is an
extremely important decision. Timing is everything. If you haven't had any
HIV-related symptoms or illnesses and are not on medication that is affecting
your job performance, there's probably no need to open up that particular can
of worms.

If, on the other hand, your illness is interfering with your work such that
your job might be in jeopardy, it's time to sit down privately with your boss
and reveal your situation. Bring a letter from your doctor explaining the
current state of your condition and how it might affect your ability to
perform your job. (Keep a copy for yourself.) Let your boss know you want to
continue to do your job to the best of your ability, but that because of the
effects of your illness or medication, there are times when your schedule or
workload may have to be adjusted. Because the law regards a person with HIV
or AIDS as a disabled person, your employer is required to reasonably
accommodate your needs if you are otherwise qualified to perform the
essential duties of the job.

Ask your boss to keep your condition confidential, only notifying those
people in the company who absolutely have to know. Illinois law requires this
of anyone you tell, but many people (employers included) are not aware of
their legal obligation. For your own protection, you may want to decide on a
non-combative way to make the people you tell aware of this. Again, it's
always a good idea to have a few pamphlets or hotline numbers available to
help your employer understand your illness and locate resources.

Once you present the facts of your condition to your employer in this manner,
you may be protected from job discrimination under the Americans with
Disabilities Act (ADA), the Illinois Human Rights Act, and local ordinances.
As long as you are able to do the essential functions of your job, your
employer cannot legally fire you, demote you, refuse to promote you, or force
you to work separately from others on account of your condition. Depending on
the state in which you live, your employer may not be able to limit your
medical benefits or life insurance coverage. (Remember, it's important to
carefully document any communication with your employer or questionable
incidents on the job for future reference.)

If you're applying for a job, be aware that under the ADA, prospective
employers do not have the right to make inquiries about your health or the
existence of a disability prior to a conditional job offer. However, they may
inquire if you are aware of any physical limitation that would interfere with
your ability to perform the essential job functions.

If you are asked on an employment application or in an interview whether you
have HIV, any symptoms of AIDS, or even whether you are associated with
anyone else who does, it's best to tell the truth or decline to answer.
Although the employer has violated the ADA, you do not want to raise the
matter at this time. An employer may not legally refuse to hire you based on
your perceived or actual HIV status. If you do not get the job, you may have
an easier time proving discrimination if the employer had knowledge of your
status. You would also be better protected from on-the-job discrimination if
hired.

Employers can request a medical examination only after a conditional offer of
employment has been made, and when two other conditions apply: the request
can be shown to be job-related, and the same examination is required of all
other entering employees of the same classification. All medical information
obtained by the employer must be kept confidential.

Keep in mind that you cannot be forced to take an HIV test as a condition for
getting or keeping a job. However, many HIV-positive people are also active
users of illegal drugs. While the ADA protects you from discrimination based
on your HIV status, it does not protect you from discrimination based on drug
use. Pre-employment screening for illegal drugs is permitted, and an employer
or prospective employer may terminate or refuse to hire you based on drug
test results.

After July 26, 1994, all employers with 15 or more employees are subject to
the provisions of the ADA. If you feel you have been discriminated against in
any employment situation, consult an attorney to determine whether the ADA or
any of several anti-discrimination laws apply to your situation.

Telling Your Child's School That Your Child is HIV Positive

You have probably heard horror stories about children who were kicked out of
school, taunted or worse when their HIV status became known. Telling others
about your child's HIV infection is nothing to rush into. However, it may be
in your child's best interest to work with certain professionals from his or
her school.

You'll want to schedule a meeting with the school's principal to ensure that
the school has a good HIV policy in place, identify those who should be
informed, and establish a working relationship between yourself and the
school. Then, set up a second meeting with the principal, school nurse, and
your child's classroom teacher.

Remind those you meet with that your child's HIV infection is confidential
information by law and that improper disclosure could be answered with a
lawsuit, which no one wants to see. Ask for an explanation of the school's
policy on HIV and obtain a written copy. Find out what education has taken
place or is planned to reduce the chances of negative responses in case word
gets out there's an HIV-positive student in the school. Ask what steps will
be taken to assure your child's confidentiality.

The school nurse should discreetly follow your child's progress, monitor side
effects of medications needed during school days, and inform you when there
is an outbreak of infectious disease. An informed teacher can reinforce
developmental goals established for your child, keep an eye out for
medication-related side effects, and observe and report possible physical or
emotional problems.

Both you and the school need to be prepared for the possibility that others
will learn about your child's HIV. In-service training for school staff and
parents, along with age-appropriate education for students will help create a
supportive environment. In the Chicago Public School system, the only
criteria for exclusion from school are large open sores that can't be covered
or aggressive behaviors that have the potential to spread HIV, such as
biting. (However, to date, not a single person has been reported to have
gotten HIV as a result of biting or having been bitten.) Your child also may
be advised to remain out of school temporarily for his or her own protection
if there are outbreaks of measles, chicken pox, mumps, or other dangerous
infectious diseases. Children excluded from school or unable to attend
because of health conditions are entitled to have a teacher assigned in the
home.

Some Personal Perspectives on Telling Others You Are HIV Positive

It may also be helpful to know how HIV professionals and men
and women who are living with the disease have dealt with telling others.
Here are some of their perspectives.

As far as telling people goes, that's an individual decision. I personally
think your doctor needs to know. If she or he can't handle the diagnosis,
then go to a doctor who can.

You should only tell people whom you really know, who'll be on your side and
be supportive, not judgmental. But realize there's only so much they can
handle. They may be wonderful and loving and caring and open--but they're
still going to be flipped out. This isn't movieland, it's the real thing. So
you have to respect their need to be flipped out for awhile. If you know the
news is going to give someone a heart attack, don't tell them.

In terms of how to tell, just be direct. People know when you have something
bad to tell them. The minute you say, "Let's talk"--they'll hear it in your
voice. It can be a double coming out for a lot of people. I also think it's
important to let the person you're telling know how you're handling it. That
will give them some clue of how to deal with it.

There's no easy way to tell someone, and there's no such thing as breaking
the news gently--because once the point comes across, it hits them like a
hammer anyway. If you have to tell someone, just tell them you're
HIV-positive, then ask if they have any questions. Then you can just answer
yes or no, open up a discussion. That can make it a little easier on you
because you don't have to reveal everything all at once. You can just answer
questions a little bit at a time.

In the hospital, you can call in a professional, like the immunologist, to
talk with the family and give them the straight story. Reassure them that
even though you're sick, you are getting good care and will follow doctor's
orders. A lot of people tell their families they have cancer, but the
families always figure it out after awhile. Lying about this won't help
anyone learn to face it any faster.

-- Dr. Harvey Wolf, Clinical Health Psychologist

If someone brings up telling their parents, I always say you'd better plan on
supporting them first. They know less about this than you do. It violates the
law of nature--kids don't die before their parents. That's what they'll be
thinking, and you've just turned their world upside-down. You'd better be
able to help them deal with it before you can expect to get any support back.

You'd also better be prepared to answer a lot of questions. I suddenly was
faced with the fact that I was going to have to tell my family about my
gayness. Now, it's out of your hands--you're "outed." The only control you've
got left is when to tell, and how.

People at work have noticed the weight loss and they ask what's going on. I
work among a relatively sophisticated, progressive group of people. I'm not
afraid for the most part that they would go, "Eww! I can't work with this
guy." But there are some people in the company who could react that way. I
guess what I'm more concerned about is people treating me weird or talking
about me, because as soon as people find out you're positive, they start to
speculate: "Is he a junkie or is he gay? He certainly ain't Haitian!
Transfusion? Hemophiliac?" I don't want all that hassle and mess. Most people
won't pry, but some don't know when to stop.

If someone is being really nosy or prying, the temptation is to just lie and
say no. But in most cases, my strategy has been to sidestep. I learned early
on, the instant you start lying about things, it gets really complicated and
awful. Now you've got to remember your lies, and back them up and embellish
them. It's easier just to say, "It's none of your business."

With certain people you can be a little more subtle, because they have a
better understanding of things like privacy. If someone were to ask me point
blank, "What's the matter, Charlie--do you have AIDS?" I guess at this stage
I'd have to say yes. Four years ago, I probably would've said, "What a
question!" trying to deflect and make them feel ashamed for asking. Now,
depending on who it is, if it's somebody I work with closely, I might say,
"Well, sometime we'll talk about that, but it's really not appropriate right
now." That's basically a "yes," but it's a "yes" that discourages further
discussion then and there. Let them seek me out privately later.

-- Charlie

After my "stoic" period, there was a period of feeling very isolated. It made
me want to be around my friends and talk about this a whole lot. At times, I
wanted to tell everyone I was HIV-positive--just go to the top of the building
and scream it.

Finding out any news like this that is health-related and mortality-related
accentuates a lot of what you don't like or what irritates you about your
partner. It also accentuates and brings to light a lot of what you don't like
about yourself. All the old behaviors, fears, anxieties--attitudes you've been
able to keep under control or channel in a slightly different way--that all
comes gushing out and there's a lot of garbage that gets dumped on the dinner
table. Sometimes, you almost feel like you're starting from scratch. Issues
in the relationship you thought were resolved are triggered all over again in
a slightly different configuration.

-- "Ralph"

I feel obligated to tell anyone who's interested in me that I'm HIV-
positive before they get too interested. If they're going to get real
interested in me, it's almost like betting on a three-legged horse. They're
not gonna win in the way they might like. They can't have children with me;
I'm not going to keep them company in their "golden years." I'm gonna be
checkin' out long before then. I just feel like I have to let them know what
they're getting into.

-- "Marie"

There are certain people in my life who I'm terrified to tell. I've had some
real bad experiences. People who found out I had AIDS wouldn't let their kids
play with mine or even come in the house. People have a very poor
understanding of how the virus is spread. I figure, the fewer people I have
to tell, the less I have to deal with.

Before I decide whether to tell somebody, I try to figure out why am I
telling them. What is my reason. Once in awhile, it's to get someone to feel
sorry for me. Mostly it's to share it with them, or because they're close to
me and kind of have a right to know.

People do treat me different once they know. Sometimes they're nicer to me.
Not always. It kind of goes from one extreme to the other. Some people will
totally stay away from you. They're out of your life for good. Others will
try to be very supportive. There aren't too many people in the middle--it's
one or the other. I haven't really had anyone come out and try to hurt me or
be mean because I have it.

I know it's impossible, but I wish people could kind of disconnect me from
my illness. Look at me, and if they want to judge me, fine--but don't keep
bringing AIDS into it. Since most people can't separate the two, I really
don't volunteer it much. I don't feel it's necessary for everyone to know
about my illness.

-- George

You may think that telling would be too stressful, but in truth, the fear of
people finding out will haunt you and the secrecy will cause you
stress--stress that right now you don't need in your life. For me, to tell was
to be set free.

Telling your children, though, that's hard. When I first came out with this,
people asked what my sons knew and how they were dealing with it. I told them
my sons knew nothing because this is what I thought, or at least what I
wanted to believe.

Then one day, my little boy Shane looked up at me, pressed the ambulance
button on his play telephone and said, "This is 911. I'll call 911 when you
die." My heart broke a thousand times as I realized that he understood my
illness all too well.

But now I knew that I could not protect my son from the fearful reality of
possibly losing his mother. I was determined to keep Shane, and Tyler when he
gets older, from ever having to deal with the thought that AIDS is something
bad people get and something you can't talk about. Shane now goes with me
sometimes when I speak to groups about AIDS, and tells everyone there that
AIDS is everyone's problem and no one's fault. And in his own way he knows
that he is helping, and my heart smiles with love that tells me everything
will be okay.

-- Shari

For those who are incarcerated, I would say tell your doctor so that in jail
you can receive medical care and have your condition monitored. If you became
infected because you've been abused, don't tell anybody other than the
doctor. I would tell the doctor an abuse situation happened and identify the
abuser. I wouldn't give permission to reveal my name, out of fear that in
retaliation I'd lose my life. If telling would mean your life, don't tell.
HIV can spread like wildfire in jails. We need to have access to condoms in
jails, because there is sex happening. We need bleach, too, because there
also are drugs in jail.

I was at a TPA meeting a few years back about who, when, and how to tell. The
speaker and some other people were advocating that you should tell your
parents, and some parents were there advocating that they had a right to
know. As far as I'm concerned, nobody has a right to know anything about me
that I don't want to tell them. I couldn't understand why everybody was so
tied up in saying they had to tell their parents they were gay, or
HIV-positive, or anything else. That is up to you. You don't have to tell
anybody anything!

-- Steven

At first I thought a lot about, "What are my friends going to say? What is my
family going to say?" Now, I just don't care. I know my family and they are
with me. If others are my friends, they will stay. If not, they will go.

-- Gail

I still have a lot of fears and resentment about how people would feel about
me, how they'd look at me if they knew. I work, and every day I go to work I
am fearful: "What if somebody says or finds out something, and they all shun
me?" When my daughter found out quite by accident that my partner was
positive, she told her boyfriend. He said to her, "Don't you ever take the
kids over to your mother's again!" That was even before they knew about me.
So the rejection is the biggest fear. But truthfully, most of the close
friends I've told have accepted me.

-- "Elizabeth"

In deciding who to tell, consider whether the person is able to keep your
confidentiality, is mature, cares about you, is knowledgeable, honest, and
open. Helping people learn more is important to me. I feel I was meant to
have this disease, to educate people. My husband and I are interracial, and I
think we were meant to be that way, too. God has given me this to tackle.
We're all here for a purpose, to help each other.

-- Evie

I haven't told the neighbors in my apartment complex yet, because you never
know how they'd take it, or how management would take it. It could be like
their swimming pool, a big sign: "THIS DAY FOR ADAM ONLY." You never know, so
you don't especially want to tell them.

If a stranger came up to me and asked if I had AIDS, I'd say it's none of
their business. I'm not going to run around town waving a sign, "I've got
AIDS!" It's a private, medical thing. You don't tell just anyone, but you
tell the people you're close to.

Telling potential girlfriends is a big ordeal. The third date is about the
right time to do it. You start out with the term "hemophilia," then work your
way from that to "HIV." You have to start there because the word "AIDS" will
send people diving out of third-story windows. You explain that it's a virus
that may or may not kill you. You have to say "may or may not," because if
you say it's definitely going to kill you, she won't stick around.

It's like the Paris Peace Talks; it's horrible. I dread that whole
conversation. How do you say it in a nice way--in a way that will make her not
run away? It makes dating a nightmare, because who wants to date if it's
never going to lead anywhere? It's a shitty set of circumstances.

-- Adam

Some people have this image that the people they tell will get really
hysterical and freak out and stuff, but what is more common is denial. All of
a sudden, nobody talks about it. You can't get them to ask how you are. I go
two months with no problems and my lover will go, "Are you sure you're sick?
Do you think about it often?" And I'll say, "Every five hours, when I take a
pill."

-- Jim

I wish I'd had something to help me decide whether to start telling people
right away. That was my biggest thing. Right away you feel alone, scared, and
then you wonder, "Should I tell my mother and father, should I tell my
friends--and what friends shouldn't I tell?" You're afraid to tell your
neighbors because they might burn your house down or something. I was very
worried about my kids and how they might be teased at school, so I didn't
tell them. I didn't tell my neighbors, either, but I figured maybe I should
tell my immediate family.

I asked my doctor what she thought I should do. Should I just lie and say I
have lung cancer, or should I come right out and tell everybody it's AIDS?
She said I had to be the one to make that decision.

I still to this day don't think it's a great idea to run out and tell
everyone. You want to share it with people, but then later, some of the
aftereffects may not be worth it. I had an incident where my sister told a
friend of hers who lives in Wisconsin, and the friend has a brother who lives
in Las Vegas, and within a day or so they both knew. The brother just
happened to be in town at a garage sale and he blurts out real loud to
someone who knew me, "What's this I hear about Sam having AIDS?" It was
supposed to be confidential. I had asked my sister to keep it within the
family. Taught me a good lesson, I guess.

The Body is a service of Remedy Health Media, LLC, 750 3rd Avenue, 6th Floor, New York, NY 10017. The Body and its logos are trademarks of Remedy Health Media, LLC, and its subsidiaries, which owns the copyright of The Body's homepage, topic pages, page designs and HTML code. General Disclaimer: The Body is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through The Body should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, consult your health care provider.